• A woman was diagnosed with a syndrome that nearly caused “internal decapitation of the head”
• She underwent a risky surgery to stabilize her neck and spine

A 28-year-old woman revealed her struggle with a rare and dangerous condition that almost led to what is known as “internal decapitation of the head,” where any wrong movement could have cost her life before she found a doctor willing to perform the high-risk surgery on her neck and spine.

Katlyn Brooks underwent a four-hour surgery in February and had been forced to wear a neck brace all day, keeping her head as still as possible.

Any sudden movement, such as pressing the brakes hard while driving, could have caused her neck to separate from her skull, a usually fatal injury, leaving only muscles and skin to hold the head in place.

Brooks had suffered since childhood from bizarre symptoms like vomiting, dizziness, and fatigue, but doctors had repeatedly attributed her complaints to anxiety and panic attacks.

After years of seeking a diagnosis, she was finally found to have hypermobile Ehlers-Danlos syndrome (hEDS) in her late twenties, the most common type of the genetic condition, which causes loose and unstable joints, severe pain, extreme fatigue, skin and digestive problems, dizziness, and sometimes issues with internal organs.

MRI scans showed that her head and spine were dangerously clinging to each other, a condition known as craniocervical instability (CCI), making her feel as if her head “moved freely” on her body.

Doctors warned Brooks that any sudden movement could lead to internal decapitation of the head, as her neck was at risk of collapsing and compressing her spinal cord, nerves, and major veins—an immediate threat to her life.

Her family launched a fundraising campaign to cover the $800,000 treatment costs, and she eventually found a surgeon at the University of Cincinnati who performed the operation, providing her almost instant relief from most of the symptoms she had endured throughout her life.

However, her struggles are not over, as she now requires corrective spinal surgery in January to improve mobility and prevent further neurological damage.